Friday, August 28, 2009

The words just don't seem to go together to me - Children's Hospital. Don't get me wrong I'm soooo thankful to have a place that focuses on healing children and to have a place like that so near to our home - we are very lucky. Somehow though I can't manage to get over seeing and hearing those two words together- Children's Hospital. Last week while we were in the hospital there were several things that I struggled with not only concerning Camilla being a patient there and what she was having to deal with but just the fact that anyone has to be in this place. If you ever have to go to CH (and I hope you never do) I recommend keeping your head down and don't speak to anyone until you get where your going! Ha - bet you'd bump into quite a few walls that way! But seriously, last week when I'd make my coffee run down the street or even to the main floor for the cafeteria I made the mistake of looking around. Looking around to see an ice cream truck parked in front of a hospital, an empty playground outside of the hosptial (all of the children are inside), the emergency helicopter continuously taking off and landing, a VERY upset family in the chapel, walking down the halls and hearing screams and crys, seeing 'quarantined' signs on doors of rooms with a crib in it, a Mother in the main lobby whose whole world had obviously just collapsed and a small funeral home van pulling up to the back of the hospital. I struggled with being identified as a "Children's Mom" 4 blocks away at Starbucks because of the band on my wrist and having to relay why my child was there to a stranger and then having to listen to a Mother say words like 'bone marrow transplant' and 'luekemia' about her son. It is so very difficult to erase these voices and images and then to think that I'm part of this group. I'm not an outsider looking in. I have a child with very serious medical problems and a very unsure road ahead of her laying in that hospital the same as the other Moms I see around me. That realization hurt the most - that and the fact that this will probably not be our last visit to this place.

Please bear with me - good days and bad - I promise to post about Camilla's tests and pics from our stay next! We have also celebrated her fourth birthday recently - pics to follow soon!

Wednesday, August 26, 2009

I'll be posting pics soon of our stay at Children's this week but I wanted to go ahead and post this video - it shows how the wires are wrapped and gives an idea of how she was confined to the bed for 48 straight hrs. She sure was a trooper!

Tuesday, August 11, 2009

Camilla started school today! She loved going back to her classroom and seeing her teachers again - Mrs. Moore, Mrs. Morgan and Mrs. Campbell. She really didn't want to leave the house this morning and it took some enticing but once she got to the classroom she immediately began working on puzzles and meeting new friends. It's going to be a great year!

This past weekend Brandon and I took Camilla to Alabama Adventure for one last summer-fun blowout before school started back! She loved the water park, the train, the carosel, the mini ferris wheel and most of all the log flume! Sorry, some of the shots are blurry and my batteries died half-way through the day!

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.